October Updates

We bid farewell to a busy October by introducing you to Frankenbear, joining his cousins Merlin Bear and Scary Bear for the fundraising for research party! We hope you’ve had a Happy Halloween to round off a busy month for Invest in ME charity and their supporters, and for the wider ME community in UK and beyond. Here’s a quick roundup with apologies for anything we’ve missed out.

Thanks to everyone joining in Paul Kayes’ GIVE IT UPtober or Ali Head’s STOPtober for Invest in ME. Lynne Allan kindly gave up the cost of her materials for the gorgeous creations she makes, so that 100% of the price was donated to IIME, and we missed Janet Smart and friends giving up Facebook for the month!

Thanks for helping to reach first phase fundraising target for The Big Give Christmas Challenge to fund two more intercalating medical students to be involved in Invest in ME biomedical research, a very successful scheme.

Birthday Wishes went to Anna Wood, kindly supporting Invest in ME with her special day.

We wrote about the first meeting of the newly-formed European ME Research Group. IIME said, “Great meeting! Very productive going forward. Great to see the collaboration going on on a pan-European level. The way forward.”

Two meetings about Severe ME were held in Sweden by RME, the Swedish member organisation of the European ME Alliance. Their beautiful video, The Invisible Ones, was shown at the IIME research into ME meeting with Mady Hornig (Columbia) and Fane Mensah (UCL) at Norwich Research Park, another success. IIME said, “The great slideshow that RME produced with beautiful music fitted perfectly into that moment in that auditorium prior to the presentations. Everyone was spellbound and one could have heard a pin drop.”

Our campaign was created to support the forward-looking path forged by Invest in ME with the range of work they do, and in particular, we focus on fundraising for their Centre of Excellence Biomedical Research strategy. However, the need for our efforts as people home or bedbound for years by this disease, is due to the dearth of funding awarded by the UK government research funding bodies to the biomedical research so sorely needed to establish definitive diagnostic tests and effective medical treatment options to address the underlying disease process in ME. Linked with this is the apparent unwillingness by the public-funded researchers to acknowledge the true results of the PACE trial, published in 2011 in The Lancet, which showed clearly that therapies based on the notion that ME is caused and perpetuated by aberrant illness beliefs and physical deconditioning caused by a fear of activity are not effective for ME.

These results came as no surprise to patients and advocates, and many may be willing to forgive the cost of £5m of taxpayers money to fund the trial, when zero was being spent on biomedical research from the public purse, if only the PACE trial researchers would publish or admit to the true results, so that the research community could move on, with NICE guidelines for doctors amended, and an end to periodic rehash of these false reports splashed across mainstream media, spawning a fresh assault from well-meaning friends or relatives, healthcare staff, schools, employers, and the public.

It has been noted that a media splash hailing a rehash of the PACE trial tends to coincide with good news elsewhere, and which goes unreported by UK mainstream media. This month saw a detailed investigative report on the PACE trial by American journalist David Tuller, published on Vincent Racianello’s Virology Blog, and an appraisal by James C. Coyne on PLOS.org of the latest claims by the PACE researchers of long term follow up, which had been predictably splashed across front pages, greeted by the usual gasps of shock-horror and sound bites from the usual suspects, the establishment ME organisations, one of which is actually responsible for the PACE trial.

So whereas we normally would not use our strength to comment on this disgraceful game which we now see played out year in year out, we are not impervious to this constant barrage of what is essentially abuse and exploitation at the expense of our lives, and it affects some of our severely ill team members in particular. Team member Stacy Hart (who sadly lost her beautiful older sister Michele to a rapidly progressive cancer this month) asked Invest in ME for their comment and you can read what they said in full in her excellent column in the Watford Observer. You can also sign a petition about the PACE trial.

So, back to our usual FUNdraising for Invest in ME Research. Warming up for autumn with the Chilli M.E. Challenge, celebrity supporters include Ruby Wax, Jenny Eclair, Helen Lederer and John ‘Boycie’ Challis, Stevi Ritchie, following the trail blazed by Pete Bennett and others. Thank you all!

Delicious Death Eater Actor Jon Campling has been waving his Invest in ME collection box at various events this month. We’re sure you will agree that he’s a scream! He has also kindly donated some proceeds from his handmade wands to IIME. That’s magic – big thanks Jon!

Mike Harley beat his personal best in the Dublin leg of his 28 EU Marathons. His update is hot off the press and you’ll hear more about him in November. Fellow marathon man Mike Shepherd, the first person with a heart pacemaker to run a full marathon at the North Pole, doing it for Invest in ME as his daughter has ME, was unable to make it to the Minneapolis marathon this month, as he had an unexpected date with his surgeon instead. Poor Mike suffered weeks of painful swelling mistaken for mumps, but turning out to be a very long blood clot, and finally had surgery last week. He posted, “Thank you everyone for your support. Today’s op went well and whilst there is a bit of the clot left around the pacemaker cables, the rest has gone. The doc didn’t want to try to get the last bits as he would have damaged the cables and that would be really bad. I have to rest for the rest of today and then take each day as it comes.” Mike gave the pre-conference dinner presentation this year, which is on the IIMEC10 DVD.

Due to illness, Julia Cottam is unable to run the Christmas Card Photo Competition this year, but you can buy designs from previous years on the 2015 IIME Christmas page and/or visit Alison Orr’s Phoenix Trading shop for excellent cards and more with all her seller profit donated to Invest in ME.

Carers of someone with severe ME, Roxie Walsh and her mother Jayne McClean raised £510 for Invest in ME, and had their events reported in the local press. Thanks to everyone spreading the word in your local area.

Makayla Nunn made an excellent start to secondary school on reduced hours and won a Student of the Week Award, “Making her MORE POWERFUL THAN A MIGHTY STEAM TRAIN” according to a tweet by Jon Campling.

Watch this space for our plans for our take on Movember for November awareness & fundraising, which will no doubt also feature some scary facial furniture! Meanwhile, don’t have nightmares this Halloween – there’s lots of progress and realistic reasons for hope thanks to the vision and dedication of Invest in ME and we thank you for joining us in supporting this amazing small charity’s great work. Let’s Do Research. Let’s Do It for ME!